Helping people affected by dementia to make decisions about continence products

Research project: The development and evaluation of a continence product decision aid for people with dementia and their caregivers

Lead Investigator: Dr Catherine Murphy
Institution: University of Southampton 
Grant type: Junior Fellowship
Duration: 36 months
Amount: £211,727

Why did we fund this project?

Comments from members of our Research Network:

'A researcher who is clearly well placed both professionally and personally to understand the significance of issues within this project.'

'Much needed research as incontinence is a very big problem for people with dementia and their carers.'

'The number one practical problem for me as a carer - a cause of stress, distress and constant hard work in dealing with it. Anything that could help alleviate the problem would be welcomed.'

What do we already know?

People with dementia often experience problems with using the toilet or with bladder or bowel leakage (incontinence). There are products that can help to contain leakage and this is important for a person's health, dignity and well-being.

Choosing the right continence products can be difficult and decisions can be based on many things including gender, mobility, type of incontinence, and how dependent the person is on any carers. For people with dementia there can be added complications due to issues around remembering why the product is needed or how it should be used. A wide range of products are available, which each have their advantages and disadvantages.

Many people with dementia and their carers will buy continence products themselves, often on the advice of a healthcare professional or other sources. However, this advice can be inconsistent and not all products work properly. 

Improving the management of incontinence has been recognised as a research priority by many long-term condition healthcare charities and a collaboration of these charities, including Alzheimer's Society, held a one-day workshop aimed at increasing awareness of the need for research into incontinence. 

What does this project involve?

Dr Murphy will develop a 'Product Decision Aid', to help people with dementia and their carers to select the most appropriate continence products. This will be adapted from similar work that Dr Murphy has already done for the wider population, particularly for men after prostate surgery.

Dr Murphy will review the existing literature and speak with people affected by dementia, carers and healthcare professionals to better understand the issue around continence products. She will use this information to tailor her product decision aid for people with dementia and their carers. She will then test the decision aid with the relevant people to make sure it is effective. She will also understand more about what people think about paying for continence products versus their availability on the NHS. 

How will this benefit people with dementia?

Incontinence is common in people with dementia, and can lead to embarrassment, loss of dignity and reluctance to take part in social activities. Helping people with dementia and their carers to select the continence products that are effective and appropriate will do a great deal to improve the quality of life of both the person with dementia and their carer.  

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